I’m having a tough day. It appears that I triggered another flare up with the travel and yard work I endured the past few days. The Humira gives modest relief for about three days after each weekly injection. Only two more days until my next one.
I’ve been caught in this chronic nightmare for six and a half years. I don’t think I can endure another twenty or thirty years like this. I did the math. I have endured constant pain for 17.5% of my life. If I see 63, I will have spent 50% in pain.
That’s a far cry from my aspirations of success and happiness in years past. Those are gone. Dreams are silly delusions reserved for children. Reality is cold and hard, and for the lucky ones, well, I’m reminded of Ecclesiastes:
“And I thought the dead who are already dead more fortunate than the living who are still alive. But better than both is he who has not yet been and has not seen the evil deeds that are done under the sun.”
Ecclesiastes 4:2-3 ESV
I know I may be taking this passage out of context because my oppressor isn’t a man–it’s my immune system that has turned against me.
Life is hard. The novelty is that we don’t know how much we will have to endure nor do we know how long it will persist. Regardless, I hope tomorrow will be better.
I’m a couple of weeks into another flare up. Like all other flare ups, I cannot see the end. I’m reminded of when I wrestled my brother in the pool. That moment he got the upper hand. That moment he had me underwater. I remember the burning lungs and the panic. I remember the struggle for just a breath of air. Oh, that brief respite that is unceremoniously interrupted by another trip under the surface. That’s what we did for fun. We tried to drown each other.
I’m laying on the couch because my knees are throbbing, my left sacroiliac joint feels like it’s crushed under an elephant, and my lower spine–my bones feel like they are burning. I just need a short hiatus to catch my breath. I’m drowning and I’m at the mercy of my body in revolt. You would think that you could grow accustomed to chronic pain. Maybe some do, but I can’t. I cannot see beyond this veil.
I’m told that people outside my prison cell thrive and enjoy life. I just want to catch my breath before I go under again.
Growing up, Christmas was a mixed bag. True, I got presents, but they came at a cost. Along with the gifts came strife between my parents–not just at Christmastime, the constant threats of divorce from my mom along with the manipulation from my dad kept our household in turmoil. It’s just that this nonsense was amplified around the holidays. They finally divorced when I was in my early 20s–about 20 years too late.
After I finally grew up and left home, I coped with the hurt by emptying bottles of booze. For years. During this time, I eliminated my parents and siblings from my life. That wasn’t difficult because we were never close.
Maybe five years passed before I somewhat repaired what little relationship I had with my mom and sister. Up until around six years ago I was a godless heathen. I committed to attending my grandmother’s funeral four years ago before I realized that her son–my dad, would be in attendance.
Surprisingly, we made amends and he would remain in good standing as long as he would respect my boundaries. Sadly, both of my parents lost their minds November 4 by demanding that they bring my now-estranged meth-addicted sister for a visit. Against my better judgment, I agreed to this precarious arrangement under duress only for them to cancel their plans the following day replete with vitriol and shenanigans–all of this after I already told my children that they will be seeing three special gifts.
This partly why I’m typically grinch-like around the holidays. The rest of my grinchiness comes from the pain from my AS which is my constant companion.
Fortunately, my family is going to Dallas this weekend to spend time with brothers and sisters in Christ to serve the homeless with Mercy Chefs. Through service, I’m reminded of the true meaning of Christmas which ultimately points to the cross.
So for those who have a nightmarish family, when your heart feels two sizes too small–look to the cross.
It’s days like this that really make it hard to live. Even before I was stricken with ankylosing spondylitis, I found it exceedingly difficult persevere at times, but now it’s unbearable. What happens when the pain gets worse? Is life more unbearable? You would think that once you reach the point where you cannot possibly bear any more pain, it increases. It multiplies. It goes beyond unbearable. It shatters all notions of normalcy and grinds you to dust.
I’ve been dealing with a minor flare up for a couple of months, but the past week or two, the pain has been increasing exponentially where I’m continually thinking that I’ve hit my plateau. As I unwrap a new day, I find that I was horribly mistaken and the previous day could easily be compared the greatest landmarks of my life–my wedding, the birth of my children, or the first time I tried hot chicken.
It’s times like these where I cannot hide from…myself. I still have dreams and aspirations. Granted, these have been muted as I have come to realize that my life has been forever changed. Oftentimes, these dreams and aspirations have been reduced from the realistic (I mean who doesn’t want to be an astronaut), to the impossible–like twenty minutes of normalcy.
It’s funny that I have a disease that traps me inside a shell of myself. It’s amusing that I’m cocooned in a broken body in which there is no escape. It’s comical only because I am what I have always feared–a cripple.
Of the many things I have feared, two are notable: fear of pain and fear of being trapped from within.
I remember a small cut or insignificant burn could ruin my day. It sounds ridiculous now that there is no such thing as life without pain, but if I stubbed my toe or skinned my knee, it was time to close up shop because my day was wrecked. Life was on hiatus.
When life wasn’t interrupted by bruises and scrapes I was occasionally overcome by the dread of living in a body that didn’t work. More specifically, I was afraid of being paralyzed. I still am because I know how quickly it can happen.
One Minnesota winter night when I was nineteen, I was outside in the snow with a bunch of friends. I was teasing my buddy Shawn and the angrier he got, the more delighted I became. Apparently, I went too far because he punched me right as I turned to walk off. No warning. I just remember the jolt of electricity that shot through my body as he punched me in the back of the neck.
I instantly dropped to the ground as my body folded under itself like a marionette. My body was numb and I couldn’t move. I went from surprise, to terror, to anger in about three seconds. I was laying in the snow on my back with my limbs askew when I began cursing Shawn for paralyzing me. I thought my neck was broken.
Between my shouts for an ambulance and my colorful insults, everybody thought I was playing around. I’m surprised the neighbors didn’t call the police as this went on for ten minutes. By then, I was getting my feeling back. I was able to clumsily flail my arms like a drunken infant. I was staggering, then walking in short order, but the experience made me even more fearful of physical disability.
So here I am today passing the time on the couch waiting for bedtime. Tomorrow morning will arrive too quickly for another day of work followed by an afternoon of couch surfing. I’m not going to assume that today will be my worst day, but I’m not going to hold my breath for a better one either.
I’ve been on Remicade more than three months, now. Before that, I was on Humira and Enbrel (not simultaneously) for nearly a year. Because of my high deductible, I didn’t get an MRI when I was first diagnosed with ankylosing spondylitis. Remicade obliterated my deductible so I finally had an MRI on my sacroiliac joints this past Monday.
My doctor advised me that it’s possible that the test wouldn’t show any inflammation, but today I received the news that I have inflammation consistent with ankylosing spondylitis. This is good news. I don’t carry the HLA-B27 gene, so this shows that we are treating the right disease, we just haven’t found the treatment that works for me. For starters, we are increasing my Remicade dose to 8 mg.
I don’t know if that will help as I think my problem lies in my superhuman metabolism. Medication doesn’t stay in my system long. The dentist has to give me extra novacaine and the symptoms still have nearly completely subsided when I get home–only a ten minute trip. It’s the same with surgery. I’m not aware of waking up in the middle of a procedure but I came close when I was ten. I was at the oral surgeon pumped full of nitrous oxide. I remember hearing the nurse telling me to breathe deeply right as I was waking up so that more nitrous could be administered. I’m sure it’s not very pleasant waking up in the middle of surgery.
If I could take Humira weekly I’d be in pretty good shape. I remember around seven days out of fourteen where I was pretty normal. The problem is that the medicine isn’t approved for weekly dosing to treat my illness.
All in all, it’s good news. A pastrami on rye would be better, but I’ll take what I can get.
The old David Lee Roth tune comes to mind this morning, yet it is antithetical to how I’m feeling since Thursday’s Remicade infusion.
This visit ended with a twist of sorts as my hips were injected with steroids in an effort to curb some of the pain. Instead, at least for now, they are stiff and achy; it is reminiscent of having to chisel and pry and hammer a worn out strut. (I am no mechanic, so any repair I make involves pry bars and hissy fits.
As soon as I complete my shift at work, I’ll be back in bed like the past couple of days. This is only a bonus from my typical searing pain in my lower spine. My upper spine feels like it has been contorted by a gorilla. I think farmers give their sick horses better treatment when they lead them out to a pasture, gun in hand. And no, I’m not implying anything as I’m against euthanasia. I’m not above whining, though.
I’ve been feeling pretty horrible the past six weeks or so. I have had my share of hiding in the bedroom. I’m just frustrated today.
(Cue DLR) — THIS MUST BE JUST LIKE LIVING IN PARADISE.
Almost 2 1/2 months since my first Remicade infusion and I’m still trying to determine how much it is actually helping. I just came off a flare up that lasted about a week and a half. I’m still not feeling terrific. Granted, I have had some days where I felt pretty good, but I don’t know if Humira is better or not yet.
Ankylosing spondylitis is a real bear and when my symptoms are excruciatingly apparent, they seem to be increasing in severity and scope. My lower spine feels as if it is bathed in flames and the pain in my hips is increasing. Then there is the newest symptom. When I lay on my back, my chest hurts in the sternum area.
I’m curious to know if you can stack immunosuppressants like bodybuilders do steroids. I figure if I get some relief from Remicade and some from Humira, that could be favorable. Granted, the risks are elevated, but why worry about the cancer you might get tomorrow if you are enduring crippling pain today?
I’ll see the rheumatologist on the sixteenth when I get my next infusion. In the meantime, I’ll just lurch like Godzilla.
My first Remicade infusion was April 20. My second was May 7. I’m taunted by short bouts of relief. I’m aware that it can take three months to begin to enjoy the effects, but when you are in the middle of a flare up, you can’t even see thirty minutes into your future. You can’t see beyond the pain.
At times it feels like my lower spine was smashed with a framing hammer. My hips don’t feel much better. At least I’m reminded of my disease because too many days of relative comfort make the pain fade into a fog where you can’t quite grasp the enormity of the crushing torment. That is perhaps the greatest gift. Those are the days where I’m completely disconnected from my illness because I can’t quite remember how crippling it feels. The memories rush back as you stagger like Frankenstein, though.
It feels like I made a mistake when I made the leap from Humira to Remicade. Humira works for me, but I dared to try something new to see if I could feel more normal. I’m drifting in agony and my dad decides to text me about my sister. About some sort of reconciliation. I’ve played that game before and boundaries are more important than dealing with something hopeless. Don’t get me wrong. I wish her the best, but we have never been close. We are strangers linked by blood. After you sift the details, we are still strangers.
I rattled off a laundry list of what I endure daily, and to look at it, it is rather depressing. I told him that I haven’t had a pain-free day in almost six years. I told him I have days where I don’t know how to survive another thirty minutes, so if God grants me another thirty years, that is 262,800 more hours of desolation. Sure, some days are better than others, but the pain always lingers. It prowls waiting to consume me. And I’m devoured moment by moment.
I don’t think he ever considered my problems. He just wants to repair a dysfunctional family before he dies. Good for him. He just needs to pick a new family on which to focus his efforts. (I hope that last sentence was properly structured. I was thinking of grammar nazis and prepositions. If not, I really don’t care as I think an alien is erupting from my spine right now).
When I wake up in the morning, my focus will be counting the hours until I can go back to sleep. An Ambien induced slumber that allows me an unconscious respite. My little slice of heaven.
I finally started my new medication to treat my ankylosing spondylitis. I had my first Remicade infusion Monday. Now I guess it’s time to wait and see. The nurse told me that it could take up to six weeks before I feel any effects. Six weeks is a long time. I hope I get relief sooner than that.
I’ve been going to physical therapy for a few months to improve mobility as well. There is nothing better that the fuzzy sensation from the electrical stimulation machine. It helps alleviate pain so well that I was prescribed my own TENS unit. I finally got it yesterday. I went to bed with it on my lower back and kept it on while I worked today. I took it off a couple of hours ago and the pain has increased in intensity and determination. Pain seems to be intentional in gaining your attention. The object isn’t finding a cure. The object is to make it one more day.
One more day. I’ve dealt with five and a half years of one more days. Swapping medications and waiting for the new one to establish authority over my illness makes those days longer. Those days are harder.
I want to just vegetate on the couch like I used to when dealing with these flare ups. I’m working again, so I have to suck it up. I have other responsibilities. “Suck it up, Princess,” is something I occasionally hear. Sometimes I hear it from myself.
I’m not trying to turn this into a whine fest. This time yesterday I was telling myself, “One more day.” I’m saying it now and I will likely be repeating it tomorrow. I’m confident the medication will help. If not, I can go back to Humira and those dreadful injections. At least they are somewhat effective. I’m hoping for even greater relief on this new medication adventure. (I would say drug adventure, but that sounds more like an excursion with the late Hunter S. Thompson).
It has been a couple of months since I have had a full-on flare up. Maybe even three or four months. I gave up counting time from the last flare up. I just try to enjoy my newfound mobility.
I’ve been on Humira for some time now. It is certainly no panacea, but it definitely helps. I’m actually surprised that I have been back to work for two months now. It can be physically demanding, and when I get home from work, I crash on the couch the rest of the day, but I’m able to do it again the next day. It is gratifying as I haven’t worked much over the past four years.
I’m switching to Remicade to see if it does better as I still have nagging pain in various parts of my body. My left SI joint has been aggravated pretty much since I went back to work. I have yet to undergo my first infusion, but I hope for some improvement. I can always go back to Humira if it doesn’t work.
I’ve also lost fifteen pounds over the past couple of months. That makes thirty pounds over the past year or so. I’m hovering around 195, but am working to get down to 180. Less weight = less stress on my joints. That, and I’m looking svelte. At least that’s what I keep telling myself.